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Dercum’s Disease: Looking to connect with others

Posted by vowelmistress @vowelmistress, Jun 13, 2022

I am having pain in my feet and ankles. I do have dercum’s and I am wondering if the lipomas in my legs can cause this? Also are there any surgeons in the Eau Claire area who specialize in liposuction for dercum’s patients?

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loriskt | @loriskt | Feb 2 11:54pm
In reply to @c3p0 "You sound right to me. I have pain all over. In the abdomen, back, neck. shoulders,..." + (show)
@c3p0

You sound right to me. I have pain all over. In the abdomen, back, neck. shoulders, hips. Sometimes in odd places where there are lipomas. It is constantly moving from place to place. Have you been diagnosed yet? I would tell you to search for CBL-514 clinical trial. It is the only open, recruiting trial. You'd need a diagnosis to get in the trial. I suggest that because trials for Dercums are very rare. Caliway pharmaceuticals is the sponsor and the trial is in St. Louis, Mo. They have had a lot of success with the previous trials, so much that they were given a fast track by the FDA. All of the other symptoms you mention go along with it for me also. Here's a link to the trial. I was too old so I got removed. I was so excited until my personal interview where they told me I was denied. I hope you can get in on it. Good luck.
https://clinicaltrials.gov/study/NCT06303570?cond=Dercum%27s%20disease&term=adiposis%20dolorosa&intr=cbl-514&rank=2

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Thank you for the info and the link, c3p0. I have a new primary care doctor and when I see her in a week I will try to get her to look into a Dercum's diagnosis, but I'm betting she's never heard of it and it will be difficult for me to get her to consider it. I'm speaking from experience with chronic fatigue syndrome. I read that it is a diagnosis of exclusion - how did you get diagnosed? Another question: I am 70, so do you think they will consider me too old for the clinical trial too? I will check out the link you sent, and thank you again.

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loriskt | @loriskt | Feb 3 12:01am
In reply to @c3p0 "You sound right to me. I have pain all over. In the abdomen, back, neck. shoulders,..." + (show)
@c3p0

You sound right to me. I have pain all over. In the abdomen, back, neck. shoulders, hips. Sometimes in odd places where there are lipomas. It is constantly moving from place to place. Have you been diagnosed yet? I would tell you to search for CBL-514 clinical trial. It is the only open, recruiting trial. You'd need a diagnosis to get in the trial. I suggest that because trials for Dercums are very rare. Caliway pharmaceuticals is the sponsor and the trial is in St. Louis, Mo. They have had a lot of success with the previous trials, so much that they were given a fast track by the FDA. All of the other symptoms you mention go along with it for me also. Here's a link to the trial. I was too old so I got removed. I was so excited until my personal interview where they told me I was denied. I hope you can get in on it. Good luck.
https://clinicaltrials.gov/study/NCT06303570?cond=Dercum%27s%20disease&term=adiposis%20dolorosa&intr=cbl-514&rank=2

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Yep, I'm too old for the study. Dang!

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c3p0 | @c3p0 | Feb 3 11:10am

I'm sorry about the trial. Somehow I got confused thinking you were younger. I can almost guarantee your doctor won't know what you're talking about. I already knew what I had and 3 of my doctors had never heard of it. I went to a university hospital and got my diagnosis from a geneticist. He said I was only the second case he has ever seen in 45 years of practice. Just so you know what you're up against. I also saw a dermatology specialist where I had a biopsy and 3 steroid injections which did nothing and I quit because I found out steroids only cause more lipomas. They can actually diagnose with MRI and also a special ultrasound. I'm adding a link with some good info. Also do a search for Dr. Karen Herbst. She is in Touscon, she is probably the most knowledgeable person in the U.S. on Dercums. She has a lot of videos and materials to downlaod. That is my present focus. To get an appointment with her. I am a long way from there but if I can get insurance coverage I'm going. Keep in touch. We can all help each other. Good luck with your diagnosis.
https://dercumsresources.wordpress.com/category/new-research/

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1 reply
loriskt | @loriskt | Feb 3 1:28pm
In reply to @c3p0 "I'm sorry about the trial. Somehow I got confused thinking you were younger. I can almost..." + (show)
@c3p0

I'm sorry about the trial. Somehow I got confused thinking you were younger. I can almost guarantee your doctor won't know what you're talking about. I already knew what I had and 3 of my doctors had never heard of it. I went to a university hospital and got my diagnosis from a geneticist. He said I was only the second case he has ever seen in 45 years of practice. Just so you know what you're up against. I also saw a dermatology specialist where I had a biopsy and 3 steroid injections which did nothing and I quit because I found out steroids only cause more lipomas. They can actually diagnose with MRI and also a special ultrasound. I'm adding a link with some good info. Also do a search for Dr. Karen Herbst. She is in Touscon, she is probably the most knowledgeable person in the U.S. on Dercums. She has a lot of videos and materials to downlaod. That is my present focus. To get an appointment with her. I am a long way from there but if I can get insurance coverage I'm going. Keep in touch. We can all help each other. Good luck with your diagnosis.
https://dercumsresources.wordpress.com/category/new-research/

Jump to this post

Thank you! I will post any progress (or not) that I make.

REPLY
ellenbret | @ellenbret | Feb 5 2:44pm

Sharing this link for more info on low dose naltrexone and upcoming documentary which may be helpful to many of us.
https://ldnresearchtrust.org/

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